Perfect

I watch Samuel a lot when he’s sleeping. I love looking at him snuggled up all calm and peaceful.

I look at his perfect hands, the dimples and creases on his fingers.The beautiful shape of his little pink mouth and his gorgeous chubby cheeks. His incredibly long and dark eyelashes that look like that just can’t be real. His unruly hair, that I can never brush into a style, shines in the light. I smile as I hear him sigh like he’s having a lovely dream.

I watch him sleep and he looks so restful. You wouldn’t guess at all the electrical charge that must be going on inside his little head and that just an hour before he was crying as his body stiffened and twisted as he had a seizure.

I watch him sleep and he looks so perfect. You wouldn’t know that he’s missing a vital part of his brain.

I watch him sleep and he looks like the most beautiful 15 month old baby you have ever seen. You wouldn’t know that development-wise he is probably only at 6 weeks old.

Recent ramblings

WHAT DOES THAT MEAN?

NICU – Neonatal Intensive Care Unit (Sam spent 8 weeks there)
MIDAZOLAM – Samuel’s emergency medicine
JULIA’S HOUSE – Hospice which provides respite and play therapy (and lots of cuddles for Sam)
KETOGENIC DIET – Special diet which can help epilepsy
GASTROSTOMY – This is a button put into the stomach and all feeds and medicines can be given through it
CHLORAL HYDRATE – Medicine Samuel has at bedtime to help him sleep
SATURATION MONITOR (SATS MONITOR) – Used to monitor heart rate and oxygen in the blood
NASOGASTRIC TUBE (NG TUBE) – Tube that goes into the nose and down the throat and feeds and medicines can be given through it